Communication in Angelman Syndrome – Part 1 – ASSERT

Communication in Angelman Syndrome – Part 1 – ASSERT


She normally like does funny actions or she makes funny sounds that I can understand He can communicate a few things,
like he does that, he does that, if he don’t want anymore. We just say like do you want to go in the pool and when she goes like ‘yeeee’ we know it’s a yes so we take her in the pool. The majority of individuals with Angelman syndrome will not develop
enough verbal speech to be able to use that for all their communication needs
and so it’s really important that we concentrate on other methods of
communication. They use body language They use some gestures, perhaps signing. Her best communication is facial expression. He is so desperate to communicate that
he’s going to use anything that he can find, you know, to reach you. He
doesn’t actually use any formal communication but he communicates in his
own way extremely well. I think Hannah understands a lot of what we say. Often you don’t know if he’s being naughty just for fun sake or if he’s trying to
actually communicate something. If he’s unwell or he needs to get a message
across he will take my hand and put it on the
part of his body that hurts. He’ll bring something you like an iPad or the car key, or his swimming trunks, and that sort of implies that that’s what he would like
to do. Jack has his own signs people close to him understand and what
he’s talking about but it does make it difficult to get understood by others so
we have more recently been introducing an iPad talker and this last year
he’s been wearing it on a harness going into school. Mealtimes we have
pictures for her to pick out which one she wants and things like that. She’ll say
Hannah, we get daddy a lot. And she say’s mama as well. She knows what she wants and
she knows how to get it. She knows how to ask for things.
That’s what matters the most to all of us as parents- and siblings probably-
it’s to give them means to communicate because it’s really his first right as a person as a human being. You have to presume that they can communicate using the given
tools, for example PODD, rather than presume that they can’t. We feel at the
moment we have just one little window and there’s so much more that he has to
say. I think there’s a lot more going on behind those eyes and that smile than we
give him credit for. If anybody tells a tale of misfortune, hardship, pain, he
starts laughing his head off. He likes nothing better than other people
suffering. She can even tell jokes now and tell little stories and
she can tell tales on people using her book. We were waiting for dad to come back
from work one day and he does surprise you sometimes because suddenly on the
iPad he’s got daddy, working, waiting. The motivation of hearing that iPad talk
back to him, it spurs him on. It’s suddenly given him a voice and so that for us we
just hope we’ll move on and on and on. Any language that you’re learning is a
process and it’s a lifelong process it’s not going to happen within three months
five months you know a year it’s something that takes a long time to
develop. I think she’s a very good communicator, it’s us who as people
around her aren’t such good communicators back to her.

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